Inspiring Futures for Adults with Autism

The documentarian Tom Murray, left, with his brother Chris in "Dad's in Heaven With Nixon."Photo credit: NYT.com

This guest post is by Peter Bell, executive vice president for programs and services at Autism Speaks. Peter and his wife, Liz, reside in New Jersey with their three children. Their eldest son, Tyler, has autism.

From the moment my wife and I heard the words “your son has autism,” we knew our lives as a family would never be the same. The concerns and challenges that come with raising a child with autism are many. But the one concern that always lingers, and intensifies when our kids become teenagers, is: what does the future hold for our child?

Our son Tyler is now 17 and we are immersed in planning his future. As we navigate our way through his “transition,” it’s becoming abundantly clear that Tyler’s future, including the ability to maximize his potential and give him a life of dignity, rests largely on our shoulders. There’s no manual to guide us. There’s no pot of money to help us find him a job, establish a home or help integrate him into the community. And we have found very few examples of adults living with autism at Tyler’s level of functioning who are thriving, leading a life of independence and purpose that are making us look forward to the future. Instead we forge ahead like pioneers heading into new territory determined to find him a better life.

A recent documentary, however, has helped reduce our anxiety and inspired cautious optimism about Tyler’s future and what lies before us. “Dad’s in Heaven with Nixon” is an 86-minute film that first premiered on the Showtime Network in early April and is scheduled to re-air on Father’s Day (June 20) at 3 p.m. ET. If you want an inspiring glimpse of what autism might look like as our children reach adulthood, then this movie is a must-see.

You may already be asking, “What does a film about Nixon have to do with autism?” In reality, nothing. The film chronicles the life of a family from New York City who has been living with autism for almost 50 years. The second youngest of five children, Chris Murray was born at a time when the prevailing medical belief was “refrigerator mothers” caused the emotional damage to their children that presented as autism. But in this case, his mother Janice was warm and caring like most moms. She did have a premonition during her pregnancy that things were going to be different with Chris. Unfortunately her instincts were correct and Chris suffered from oxygen deprivation during what turned out to be a very traumatic birth. It wasn’t until years later that he was diagnosed with autism. Through the use of beautifully restored home movies and the insightful narration of filmmaker Tom Murray (the eldest Murray child), we recognize that autism in the 1960’s was pretty much the same as it is today, despite altered hairstyles and fashions of the supporting cast.

Fast forward to present day, Chris is now a 50-year-old man living a purposeful and rewarding life in New Haven, Connecticut. In the early 1980’s he attended Chapel Haven, a transitional residential program serving adults with cognitive disabilities. He graduated from that program well over 25 years ago and he now lives on his own and works two jobs: one at a local hospital and the other at a health food store. During his free time, he is an accomplished artist. His paintings, mostly of buildings and landmarks from his native New York City, are in high demand by art collectors and aficionados, including Gloria Vanderbilt. Although he could easily make a living selling his artwork to the rich and famous, he prefers to work his two jobs and lead a simple life. He is happy and content, safe, living his life mostly on his own. He creates art not for fame or profit, but for the experience of the art itself. Mission accomplished in our book.

Another prominent message of this film, one that will probably resonate with many families in our community, is that autism is just one part of the fabric that shapes the dynamics of a family. Every family has a story, and in the case of the Murrays, we learn that the experiences and attitudes of other family members, in both current and previous generations, have had a profound effect on the lives of everyone in that family. It was not only Chris’ autism that provided a challenge for the Murray family, but the additional layer of mental illness and the devastating damage with accompanying resilience in some, that make this film so riveting.

Which brings us back to the title – “Dad’s in Heaven with Nixon”. Without giving it away, the title comes from a comment Chris makes on camera and a perspective and simplicity that would seem odd to most people – but maybe not so strange to those who share life with a loved one with autism. While talking with his brother Tom many years after his father’s death, Chris shares his insights into death and heaven, concepts that are hard for anyone to grasp, but especially difficult for those on the spectrum. At a time when your heart begins to feel heavy and your eyes want to well up, Chris magically lightens up the moment with his priceless comment. At this instance, it all makes perfect sense.

With Father’s Day right around the corner (Showtime also did a showing on Mother’s Day), here’s an uplifting and hopeful film that all families with a loved one affected by autism should take the time to see. If you’re like me, this is a film that’ll stick with you. And I hope you share the sense of hope, optimism, and, perhaps most important of all, awe at the power of love, that my family experienced.

As Janice Murray poignantly says towards the end of the film: “Love really can make miracles happen.” Now that’s inspiring.

HI!. MY NAME IS ILEANA MORALES, I HAVE A 17 YEAR OLD AUTISTIC TEEN, HIS NAME IS DAVID. WHEN HE TURNED 16 ( AND THE HORMONES KICKED IN) EVERYTHING CHANGED. HE WANTED FRIENDS, A GIRLFRIEND, HE TRIED TO MAKE FRIENDS AT SCHOOL. THAT’S WHEN HE REALIZED HE WAS DIFFERENT . DAVID TURNED FROM A SWEET BOY TO AN AGGRESSIVE TEENAGER, HE EVEN STARTED HURTING HIMSEL.HE CRYED AND SAY:”MOM I HAVE NO FRIENDS, I’LL NEVER HAVE A GRILFRIEND”.HE WAS FRUSTRATED AND SO WAS I. I WAS DESPERATE. I ENROLLED HIM IN THE BEST BUDDIES PROGRAM.BUT AFTER EVERY OUTING, HE WOULD COME HOME MORE DEPRESSED, HE WOULD SAY: “REGULAR KIDS DON’T WANT TO TALK TO ME”. I DIDN’T KNOW WHAT TO DO.- ONE DAY, TALKING TO ROSA (THE MOTHER OF ONE OF DAVIDS CLASSMATES) WE DECIDED TO OPEN A CLUB. ROSA CELEBRATED HER DAUGHTER MELISSA, SWEET SIXTEEN PARTY, THEY WERE SO HAPPY, THEY WERE TALKING ABOUT WHAT THEY WERE GOING TO WEAR, EVEN THE TEACHERS AT SCHOOL WERE TEACHING THEM HOW TO DANCE, THEY HAD A BLAST. THE FOLLOWING FRIDAY I TOOK MY VAN, AND ROSA AND I TOOK 7 HIGH FUNCTIONING TEENS TO “HANG OUT”, WE WENT TO THE MOVIES ( THIS WAS THE FIRST TIME THEY WENT TO THE MOVIES WITH FRIENDS), THEY WOULDN’T STOP TALKING AND LAUGHING; THEY WERE BEING TEENAGERS. AND ROSA AND I WERE CRYING OF HAPPINESS.NOW WE GO OUT EVERY FRIDAY. DAVID AND HIS FRIENDS ARE NOT AGGRESSIVE ANYMORE; THEY ARE TOO BUSY PLANNING THE NEXT FRIDAY OUTING.
THERE IS A LOT OF HELP FOR LITTLE KIDS BUT THEY ARE FORGETTING THAT OUR KIDS ARE BECOMING TEENAGERS WITH ALL OF THEIR TEENS NEEDS..- OUR TEENS NEED HELP, THEY LACK SOCIAL SKILLS, THEY HAVE NO FRIENDS THEY FEEL LONELY. AS THE MOTHER OF AN AUTISTIC TEEN, I CAN TELL YOU THAT THEY SUFFER AND SO DO WE.
I WANT TO SHARE THIS WITH EVERY MOTHER. OUR LITTLE CLUB IS WORKING, WE WOULD LIKE TO MAKE IT GROW. WE WOULD LIKE TO SEE 100’S OF TEENS HAVING FUN….JUST BEING TEENAGERS.

Wow, what a testimony, Ileana. I haven’t seen the movie but I plan to. My son is 19 and attends a center for autism. Unfortunately, he is not high functioning which makes our situation very stressful and difficult. Our day to day challenge is finding and doing things he likes. He also changed from a mild-mannered, easy-going child to a loud, aggressive teenager. Being non-verbal, he lashed out with hitting others and himself and throwing things. We’ve repaired so many walls and ceilings; my husband is pretty good at it now. we have him on a couple of anti-psychotic meds and he has a seizure disorder (came from a possible stroke/has lesion on left side of brain)at birth/loss of oxygen) on top of that. This lesion is at the center of his speech area. However, he was saying words up to 2 1/2 yrs.-then it all stopped and his autistic behaviors began. Who knows what happened? All I know now is that I have a low-functioning son who has a wonderful, loving heart and can be good-natured. He has is moments of frustration and aggressiveness, but we continue to do what we can for him. I want to be optimistic, but I don’t see him living independently or working….not yet anyway. So we spend our time thinking of ways to help Matt in teaching him life-skills each day and praying for a miracle.

ileana morales

June 15, 2010 at 9:34 pm

HI TERESA, JUST KEEP BEING A WONDERFUL MOTHER AND ALWAYS BE OPTIMISTIC. MY SON DAVID ONLY SPOKE 3 WORDS AT THE AGE OF 10 ( MAMA,PAPA AND, OF COURSE,”TOY” ). BUT THANK GOD, ALL OF THE SUDDEN, HE JUST WOULDN’T STOP TALKING. SO YOU SEE, MIRACLES HAPPEN!.I PROMISE YOU I’LL PRAY FOR MATT EVERY NIGHT.

I’m a 39 year old autistic. I’ve been married for 11 years, and have a special needs son myself (Cerebral Palsy scar in the language center of his brain- he shares many traits with autistics, but an absolutely OPPOSITE personality).

I’m a very odd duck, but I had over a $70,000 income last year.

There is hope. The key, is obsessions. They aren’t the negative most people think they are- they are instead the very key to happiness and a career.

Another thought occurred to me. Since this blog seems to contain at least an attempt to outreach to those hurt by earlier actions by Autism Speaks, perhaps the next step would be to put Tyler Bell on the Board of Directors for Autism Speaks, as a show of good faith and belief that autistic people *can* be heard and that their perspective has value.

Thanks for this suggestion, Ted. I believe Tyler, and many other individuals with autism, already have a lot of influence within Autism Speaks. His voice and his perspective are heard every day. Thanks for making his dad smile. :)